A day in the life of a clinical trial patient: Part one
Disclaimer: All characters and other entities appearing in this work are fictitious. Any resemblance to real persons or other real-life entities is purely coincidental.
Joining a clinical trial can understandably be daunting. Many patients have questions around what the trial process is like and want to know the experiences of other volunteers. This blog follows a day in the life of Mark Blyth, a patient representative, to help give you a sense of what it can be like to participate in a clinical trial. Keep an eye out for future “diary entries” from Mark.
Introducing Mark Blyth
Mark Blyth, a fictional patient, was diagnosed with prostate cancer in May 2016. Several months after his diagnosis, his treatment program was having mixed results, which caused him to investigate participating in a clinical trial as an alternative therapy option. With help from his primary physician, Mark enrolled in a phase 3 clinical trial testing a developmental immunotherapy drug targeted at treating prostate cancer.
This blog series is based on insights from real patients that have been combined and adapted to create Mark’s clinical trial diary. All the people included in this diary are fictional characters.
Friday 27th October: Booking a trial appointment
Some luck! After almost a week of waiting, Dr Barts had contact from an oncologist who is running a clinical trial testing a developmental drug to treat prostate cancer. Apparently, I’ll have to visit a clinic, or trial site, occasionally. I was worried there wouldn’t be one nearby, but luckily, there is a participating clinic an hour’s drive away. Dr Barts has made me an appointment next Wednesday, where I will meet Dr Forsyth, the lead trial physician.
I must admit I’m a little bit nervous now it’s looking more likely that I’ll participate in a trial. It also doesn’t help that my partner has started referring to me as the Guinea pig. They mean it as a joke, but I know they still have mixed feelings about the trial and are concerned about the risks. I don’t know what scares them more – the idea of me having a side effect, or of the therapy not working. It’s possible, after all, that this therapy could be a last shot for treatment. And that scares me. But I am hopeful.
Wednesday 1st November: Meeting the trial clinician
In the morning, my partner drove me down to the clinic to meet Dr Forsyth. The meeting was a long session where Dr Forsyth told me about the clinical trial process, what side effects I could experience and explained the consent papers. I left with my head spinning with all the information.
But Dr Forsyth was fantastic – very friendly and helpful. I asked her what the drug was, and she said it was a medication that had already gone through two stages of testing with thousands of people. This eased my nerves a bit. The drug is a developmental immunotherapy drug that helps your immune system fight the cancer cells.
The trial would be long (1-2 years) with a need to follow up after that time to make sure I’m still doing okay. But it will definitely be worth it if it works. I’d only need to come to the clinic on set days to receive an injection. On these days they will also check things like my blood pressure. I will also have an app on my phone where I will update them about my health status. I’ve got their phone number and they may call me sometimes to see how I’m doing.
I was happy to join the trial, so I booked my injection appointments before I left the clinic.
Tuesday 14th December: Day one of the trial
Today is my first injection. I drove myself to the clinic and I’m greeted by a receptionist who helped calm my nerves. I then met Jessica, one of the study nurses who escorted me down to one of the rooms.
Jessica then did some routine testing, something I’m used to. Urine sample given, she sits me on the bed, fits a cannula, draws blood (for white blood cell counts, among other things), and keeps me company while we wait for Dr. Forsyth to come and do the injection. I expect the injection to hurt, and it does a bit, but I’ve been poked and prodded so much since the diagnosis that it doesn’t bother me.
I have to wait here for the next few hours as they monitor me. So now I sit in my comfy armchair with my things around me, looking out of the window and the view of a small garden and the scraggy woodland beyond.
Jessica comes in every now and again to check up on me. She asks questions about my psychological state – “How are you feeling?” and physical activity “How much time a day do you spend being active?”. They are official questions she reads from a document, but it feels friendly rather than clinical.
After a few hours of monitoring me, they were satisfied with how I was doing and said I could go home. What a strange day. The whole thing felt like I was going to the hospital like normal rather than a clinical trial. I felt really cared for.